Scared stiff

Hi Raiders 

This is the worst time in a cancer diagnosis but honestly you will feel better and more confident when things move on and a plan is in place 

There are different types of lymphoma and here is a link to the different forums on MacMillan so you can join one when you have that diagnosis 

Types of Lymphoma

I’ll ask Mike Thehighlander 

 if he can help reassure you, meanwhile 

Best of luck 

Hi Pal. 

Non-itac sinonasal adenoarcinoma here. "Back of the nose" as in, the middle meatus (the bones behind the nose). Went from seeing the GP (in Leeds) end of April, to a whirlwind of calls and appointments for MRI, CAT scans, biopsy and ultimately the "sad chat" with the cancer surgeon.

At the biopsy appointment, I had a super-serious surgeon and a jolly nurse casually laughing about "bits coming out of my nose." "Don't worry, its not the tumor, its the packing we put in." TUMOR? She just said TUMOR... Then the medic looked at me gravely and "Wished me all the best". "What with the drive home? Or are we pretending not to talk about a serious cancer?" I was too scared to ask directly and they didn't want to hit me with an educated guess, given the need to test the biopsy tissue.

Then a date with the cancer surgeon (still rationalised that a tumor doesn't mean cancer and what I was ultimately diagnosed with was absurdly rare, so I was still living on Benign Street). No. T3N0M0 in the shnoz. "Surgery within the month". Had the surgery and the follow-up 3 weeks later. Surgery was not a problem. Endoscopic (up the nose) no visual changes and minimal bleeding and pain. 3 hours or less in the operating theatre. Got it all out, but just started radio last Weds at the Bexley Wing of St James's to kill any chance of recurrence.

If you've got it, Leeds is about the best place you could be treated for it. My surgeon and the radio surgeon are authorities on their subject (written published papers) who work at a teaching hospital for a reason. 

I spent the first month, having read the horror story letter from the biopsy surgeon to my GP (an aggressive tumor with extension - that has spread etc...) absolutely scared to death. If I wasn't googling the sh*t out of it and watching hours of You Tube and Medical Abstracts from New York to Singapore, education lectures to student surgeons etc.. I was dreaming about it at night. That passes. An acceptance comes, funnily enough after you're told the hard news (post biposy). There is no get out, no magic cure, no watering down the diagnosis. You've got it. You're in the club. 

The torture with this is where am I on the stage? Am I "This is easy to fix" or is it "Really wish you came in earlier than you did". It's post surgery when they've taken samples of what they got out, you finally get an idea. But let me tell you they can kill off advanced inoperable tumors with pre-surgery radio and chemo. Lots of options to fix it. The internet is full of very dated sample studies with horrific mortality rates. So don't go by these. Also oddly proud one-eyed survivors and other cancer gore types gurning into photo's on Facebook. Weird.

I used AI for summarising my situation and their information so I could push the doctors for treatments they hadn't recommended. The AI pretty much demanded I enquire about the PROTIS proton therapy trial at The Christie in Manchester. (I was eligible, had the call with Dr Thomson and we ruled it out in favour of Leeds over delay to treatment and logistics). Also insisted I seek a baseline eye exam, given the position of the tumor bed and the radio. So I can manage any eye issues down the line. Same with teeth.

Hope this helps.

Thanks Wilbur 

I'm in Belfast so had endoscopic surgery there for sinus issues then they did a biopsy because the tissue they saw was unusual. Pathology report came back to say Lymphoma. But they have sent it to Leeds to get the subtype and do other tests on it. Bloods and scans are this week. My head is wrecked. 

Hold your horses. The poor chap doesn’t have a diagnosis apart from lymphoma 

The treatment for lymphoma is a bit different in that it’s a diffuse blood tumour. 

Raiders said:

My head is wrecked. 

I know it’s hard but I can assure you that lymphoma is treatable. I have a close friend who had a course of chemotherapy at age 80 and is fit and well. 
Im sure you don’t get radiation like us head and neck cancer patients do. 

Thanks Beesuit

Just not many stories about nasal lymphoma success and it seems very rare , all the stories on Facebook and online end badly. That's amazing with your friend. I am just in the waiting phase and want to know. 

I'm fresh to this as in, in the middle of treatment. He said Leeds. I responded with some useful info regarding Leeds.

I’ve asked Mike our resident lymphoma guru to help but it’s Sunday and he might be busy with his family. I’m sure he’ll be along when he can. 
The waiting is really the very worst part but just hang on till you know what is going on. 
Every persons cancer is unique. My oncologist told me that Stats do not help as they are all retrospective and generalisations. 
You’ve discovered that searching in Google can misdirect you all over the place. Have some faith in yourself and your hospital team for now. 

Once biopsy is back and scans completed I'll have a better idea of what I'm dealing with.